'It's not the life we wished for him'

When Lizzy Drew's son, Isaac Molyneux, was born almost 20 months ago, she and her husband Daniel Molyneux had never heard of cystic fibrosis (CF).

They had an inkling something was wrong when Isaac started losing lots of weight soon after birth.

"Milk was passing straight through him," she says.

Isaac Molyneux was diagnosed with CF soon after he was born

A test that is done routinely in the Cambridge area where they live, revealed that their baby had the disease a few weeks after he was born.

"We took the news badly. We didn't know anything about CF, there was no family history of CF."

It was a dark period, she says.

She found the strict regime of medication and physiotherapy difficult to deal with alongside the usual pressures of handling a newborn.

Lizzy was breastfeeding every hour because Isaac was hungry.

We love our child and he is fantastic, but this is not the life we had hoped for him Lizzy Drew

And to aid digestion, she had to mix enzyme capsules with apple puree and feed it to him before every breastfeed.

Isaac was also given daily doses of vitamins and antibiotics to prevent infection.

Heavy-duty regime

Initially they had to take Isaac to hospital once a week, which she found reassuring, rather than burdensome.

Cambridge has one of a dozen specialised CF clinics in the UK and the couple also received help from community nurses.

And thankfully they have open access to the local hospital's children's ward if they need to go in for any reason.

DAILY LIST OF MEDICATIONS 2 x antibiotics (1 oral, 1 nebulised) at least twice 2 x vitamins (to help food absorption) 2 x nutritional supplements (to help weight gain) Enzymes (up to 18 capsules per day, to help digest fats and proteins) 2 x inhalers (for wheezing, and preventing lung inflammation) at least twice 1 x oral medication for asthma (for wheezing) 1 x oral medication to neutralise stomach acids (to help enzymes work better) Plus antibiotics by IV in hospital as and when needed

As time goes on, caring for a child with cystic fibrosis remains demanding, even when the child is well.

As well as administering medicine, there is the nebuliser to contend with which blows steam and vaporises medicine and can be noisy too.

There is also the daily physio which involves tapping Isaac's chest and back to get the mucus that accumulates in his lungs moving.

They perform it themselves and it takes 10 minutes twice a day when he is well.

And the demands on time increase when Isaac is unwell.

Lizzy's husband is self-employed so can be called at short notice, while her mother looks after Isaac on the three days a week Lizzy works in her publishing job.

"We do it all as a family," she says.

With so many treatments to remember and administer, Lizzy says you have to be very organised. She keeps a list of medicine on her fridge.

But compared to other children, she feels Isaac "has had a worst deal than most" as he is more at risk of infection because of his condition.

"He has a runny nose for longer than you would expect, he wheezes [from the asthma], he coughs a lot" and the coughing can be extreme. "He also tastes very salty when you kiss him.

"He is very hungry as he needs 50% more calories than a normal child his age."

'Isolating'

Lizzy says she has found the experience at times isolating.

Although she wants Isaac to have as normal a life as possible and takes him to playgroup so he can mix with other children, she is also wary of him catching any infection.

CYSTIC FIBROSIS Most common inherited life-threatening disease in UK It affects vital organs - lungs and pancreas There is currently no cure More than 7,500 people in UK have CF 70% of those are under 20 years old Each week five babies are born with CF Average life expectancy is 31 Figures from the Cystic Fibrosis Trust The future with cystic fibrosis Cystic fibrosis

She says it can be awkward trying to explain Isaac's condition to people who don't know about it, especially if he has a particularly bad coughing fit.

"Most people don't know about CF. A lot of people don't know what to say so they don't say anything at all. Some people look terrified. But sometimes it is a nice relief to talk about it."

For this reason and because of all the medical treatment required, she would not put him in a nursery and says that if her mum didn't look after him she would give up work.

She also does not meet up with other CF sufferers because of the risk of cross-infection, but she keeps in touch with them through online forums.

"Now he is bigger stronger, he is eating well, he looks well, he is really a happy boy, it makes it easier."

For their next child, she and her husband are considering having IVF treatment to ensure the selection of a CF-free embryo.

This is because children with CF can't live with other people who have CF to reduce the chance of cross-contamination and the chance of increased infection.

"Isaac was unlucky on the genetic lottery. We love our child and he is fantastic, but this is not the life we had hoped for him."